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kylie2354's avatar
kylie2354
Member
13 years ago

Tamoxifen Yes or No?

Hi,

I am after some feedback from people who have been recommended to take tamoxifen and why they decided yes or no it wasnt for them. Anyone that has taken it what side effects if any did you have? I was diagnosed with DCIS early stage breast cancer and had a full mastectomy with immediate reconstruction on 9th Oct 2012. I consider myself to be very very lucky as I do  not need radiation or chemo but have had it suggested by my medical team to take tamoxifen for 5 years. I know I may not get the side effects but they scare me. Thank you for reading this.

13 Replies

  • If you have to take anti hormone treatment then Tamoxifen is your safest bet.It's been around the longest and has the least side effects compared to the aromitase inhibitors. When I had my first breast cancer in 2003 I was supposed to take Tamoxifen but I was 47 and had terrible side effects.I persevered for 3 months and even tried some of the others but no good. I stopped it ,did my research and decided to take flaxseed,cruciferous veg etc. I was ok for 7 years until cancer came back in the very same spot so had to have a mastectomy.Now I dare not take Tamoxifen.It somewhat agrees with me this time.But I have also armed myself with other drugs which counteract hot flushes and mood swings.They really help and have no side effects . The thing is,you can take products to reduce your eostrogen but you will still have some floating around.Tamoxifen doesn't reduce eostrogen but rather,blocks it from entering cancer cells that are eostrogen +ve. I'v now been on Tamoxifen for over 2 years and haven't had any major problems. If I'm taking a long flight then I stop it for a few weeks and have a medication holiday.I know we are all different and ultimately you have to do what feels right for you but it helps to hear other women's experiences while you are weighing it up.My best wishes to both of you.

                                     Tonya xx

  • If you have to take anti hormone treatment then Tamoxifen is your safest bet.It's been around the longest and has the least side effects compared to the aromitase inhibitors. When I had my first breast cancer in 2003 I was supposed to take Tamoxifen but I was 47 and had terrible side effects.I persevered for 3 months and even tried some of the others but no good. I stopped it ,did my research and decided to take flaxseed,cruciferous veg etc. I was ok for 7 years until cancer came back in the very same spot so had to have a mastectomy.Now I dare not take Tamoxifen.It somewhat agrees with me this time.But I have also armed myself with other drugs which counteract hot flushes and mood swings.They really help and have no side effects . The thing is,you can take products to reduce your eostrogen but you will still have some floating around.Tamoxifen doesn't reduce eostrogen but rather,blocks it from entering cancer cells that are eostrogen +ve. I'v now been on Tamoxifen for over 2 years and haven't had any major problems. If I'm taking a long flight then I stop it for a few weeks and have a medication holiday.I know we are all different and ultimately you have to do what feels right for you but it helps to hear other women's experiences while you are weighing it up.My best wishes to both of you.

                                     Tonya xx

  • Thanks for your reply Janet. I have spoken to a local breast nurse and also my breast nurse at Peter Mac today and feel a bit more reassured after talking to them so will procrastinate until we come back from our visit to plastic surgeon next week then maybe give it a go and see what happens.

    Hope all goes well with your last radiation treatments and the rest of your journey. Kylie

  • Hi Kylie,

    I've had chemo and am now almost finished radiotherapy - 3 more to go. I'm supposed to start taking tamoxifen after that. Like you I am worried about the side-effects. I have read a lot online that has freaked me out and I have agonised over the decision. My onc has used an online program Adjuvant Online to calculate that tamoxifen will decrease my chances of getting a recurrance by about 10%. I don't think I can dismiss that so I do plan to take it. But I want to make sure I am as fit and healthy as possible before I start to hopefully avoid the weight gain and other problems. As I'm a bit tired and run down from the chemo & radiotherapy - it's been a gruelling year - I plan to take a couple of months to get myself back to the gym, get fit and try and maximise my health before I start. I'm hoping that my body will cope better with this drug if it is in good shape at the outset.

    There is a substance derived from cruciferous vegies like broccoli called diindolymethane or DIM (it comes from something called indole 3 carbinol)  which is thought to metablise excess estrogen in the body. I've read that some people use this as a natural alternative to tamoxifen but it hasn't been properly researched yet so it's a bit risky. Still I regard that as a possible fall-back position if taxmoxifen turns out to be unbearable. (There is a study currently underway at the University of Arizona where is is being used with tamoxifen in the hope of improving breast cancer outcomes.)

    I guess the other thing to keep in mind is that not everybody has bad side-effects. It is a very effective drug at keeping breast-cancer away so if it's been recommended you should probably give it a try. If it turns out that the SEs are terrible you can re-assess. Good luck, I hope it is okay for you. Janet :)